For More Information

• The “Show Us Your Sass Walk” will be from 10 a.m. to 3 p.m. Saturday, Sept. 20, at Friendship Park in Orion Township to raise money for the United Leukodystrophy Foundation. Besides a short walk, the event will include food, goodie bags and family activities.

• Registration for the “Show Us Your Sass Walk” will be $10 for adults but free for children 12 years old and younger. T-shirts will be included in the cost and families can register that morning.

ORION TWP. >> Maybe you’ve seen their wristbands or their navy blue T-shirts that say “Sass Attack” around town.

Local residents Jessica Hall, 31, of Orion Township, and Kayla Grundner, 31, of Waterford, are involved in several charitable activities this year in honor of a dear friend’s daughter, Kelsey Perry, who has a life-threatening disease. What is different is many of these projects are not to raise money for the family but to provide goodwill to other organizations.

“The fact that I have a child is huge,” said Grundner, explaining why she has been so involved. “I’ve known Courtney for a long time. To know this could happen to any of us, to not do something for them like this, would just kill me.”

Advertisement

Hall has known Courtney Atwell, 32, of Ypsilanti since they were in middle school. The three girls grew up together, all lived in the same neighborhood at one time and graduated from Avondale High School.

Last year, doctors diagnosed Atwell’s daughter, Kelsey Perry, 10, with a rare disorder called Alexander disease. Perry, who lives in Ypsilanti with her mother, Atwell, and father, Jason Perry, has always been small for her age and experienced vomiting and fatigue for a long time before her diagnosis.

The disease, which is so rare there only have been 500 cases reported, is one of a group of disorders called leukodystrophies and affects the nervous system. Complications from juvenile Alexander disease, which Kelsey has, include speech abnormalities, swallowing difficulties, seizures and poor coordination. While Kelsey has some complications such as a feeding tube and back brace for scoliosis, she is feeling well, Atwell said.

Grundner and Hall are planning a “Show Us Your Sass Walk” from 10 a.m. to 3 p.m., Saturday, Sept. 20 at Friendship Park in Orion Township to raise money for the United Leukodystrophy Foundation. Besides a short walk, the event will include food, goodie bags and family activities.

When Atwell first learned of her daughter’s illness, the mother of four struggled to get out of bed for weeks, she said. But something about Kelsey’s “spunky, sassy” attitude drove her to find good in the world.

“I said, ‘no way is this going to ruin us,’” Atwell said. “We need to find good in this nightmare, so we decided to get out in the community and start making some good times and putting smiles on faces. Kelsey is amazing and puts her input in everything.”

So a group of family and friends led by Atwell, Hall and Grundner formed Team Kelsey.

In February, they led a toy drive at CS Mott Children’s Hospital in Ann Arbor, where Kelsey had three surgeries, and collected more than 100 toys for pediatric patients.

The next month, they undertook a charity project called “Help Our Furry Friends” and collected canned food, toys, cages, cleaning supplies and other pet products for dogs and cats they donated to rescue centers in Clarkston and Oxford. The group had four shopping carts full of items including homemade dog treats.

Raising money for “Walk For Wishes,” a fund-raising event for the Make-A-Wish Foundation held at the Detroit Zoo May 3, is their biggest project yet. While the group only expected a few family members and friends to participate, 100 people signed up with Team Kelsey and raised $11,000 — the top fund-raising team besides corporate sponsors. In addition, Kelsey collected more than $2,000 — the second-highest individual gift.

Other donations and proceeds from the sale of Team Kelsey T-shirts have gone to Jump Rope for Heart, Relay for Life and the National Brain Tumor Society, while sales of $2 bracelets contributed to the United Leukodystrophy Foundation.

A couple fund-raising events have been organized to help the family with bills, but Atwell and Perry have never asked for anything.

“Anything we’ve done for the family has been people stepping up and doing it,” Hall said. “She’ll never ask for it. They’re big into helping people. They’re big into community. Now, it’s our turn. It’s only natural to give to them.”